Tales of Isolation Day #17
Today was a gloriously beautiful day. I spent a good deal of it outside, keeping an eye on the kids as they paddled around the pond in a canoe playing “water taxi.” I continue to feel stronger and closer to normal. It is easy to sit in this safe little bubble, looking at the sheep grazing on the hillside and forget the suffering that thousands of people are enduring. Coronavirus has now sickened over a million people worldwide, more than a quarter of whom are Americans. There is little doubt that if we had a better handle on testing, those numbers would be even more shocking. For every case out there, documented or not, there are even more people, family members, friends or healthcare workers, who are caring for the sick, trying to save lives and stay safe.
Stories are emerging of restricted visitation in hospitals, even for patients at end-of-life. Every human recognizes that being surrounded by those we love at the hour of our death is a dignity we all deserve. Additionally, there is the looming reality that some patients will not be able to have access to ventilators. Hospitals are already beginning to draft protocols for evaluating a patient’s chance of survival after being placed on a ventilator. Those who have the best chance of recovery will be given the resources available, while those who have little to no chance will be given palliative measures and end-of-life care.
Many people are horrified at the thought of medical providers making such decisions. In reality, however, even when there is no scarcity of resources, physicians calculate the risk versus the benefit of aggressive life-prolonging measures every day. Current data suggests that only about 30% patients who experience acute respiratory failure due to sepsis survive to be extubated and recover. Ventilated Covid-19 patients appear to have a survival rate of somewhere around 15%. With those kinds of numbers, it is only logical that physicians should take a good long look at the underlying health condition of a given patient prior to recommending the use of a ventilator.
There is a misconception that when we recommend against treatment or CPR, it is because we have decided that the patient’s care is somehow not worth the effort. People often think that their doctors have “given up” on them. I have worked in Palliative Medicine for more than a dozen years, encountering critically ill patients with virtually every disease process that can afflict the human body, I have consulted with physicians in every specialty imaginable. I can tell you, it is not about giving up.
There is a particular personality type that chooses a career in medicine. Doctors are often high achieving individuals who pride themselves on doing things that others don’t know how to do. They like to see themselves as heroes, they like to help bring about miracles. They do not like to lose. Every time they lose a patient, every time the cancer comes back or the surgery fails or the infection overwhelms, doctors take it very personally. They see illness as an enemy to be conquered and if they think there is a chance that they could win the battle, they will keep trying. Despite all the advancements of medical care, with fancy machines and targeted therapies, people who work with the critically ill see death far too frequently. Any seasoned critical care doctor or nurse will tell you that the true enemy is needless suffering. No one who has watched someone suffer a death prolonged by futile care wants to let that happen to anyone ever again.
Healthcare workers look to palliative measures at the end of life out of a determination prevent needless suffering. Palliative care, as a medical specialty, is a vital part of any well-functioning healthcare system. There is a robust and growing body of research on how to manage complex symptoms at the end of life and how to support patients and their loved ones in the emotional and spiritual journey of dying. These efforts give us hope that, while we will never conquer death, we have a real shot at taking on the evil of suffering. In order to do that though, physicians must sometimes make heartbreaking decisions about whether or not a ventilator machine will alter the outcome for a dying patient.
The heart of any palliative end-of-life care plan involves communicating difficult truths about prognosis, guiding patients and families through complicated decisions, creating opportunities for meaningful farewells, and directing care of the patient’s symptoms. There needs to be time at the bedside for patients and family members and healthcare workers to come to terms with what is happening. There needs to be exquisite precision in the use of medications and other interventions to deal with pain, breathlessness and agitation in order to ease the patient’s suffering. Unfortunately, the circumstances we find ourselves in now, with scarcities of equipment to take care of patients and protect healthcare workers and visitors, accepted best practices for palliative care are having to be adjusted in every hospital in America. It means that family members cannot safely be at their loved one’s side. It means that physicians might never even meet face-to-face with family members who are having to say goodbye. It means that when there are too many patients and not enough ventilators, those precious machines will have to be reserved for only those patients whom the physicians believe they can save.
· This post first appeared as part of a series and can be found on my blog The Glass Bell at https://rebeccafullerdotblog.wordpress.com/